State Implementation Grants for Improving Services for Children and Youth with Autism Spectrum
Disorder (ASD) and other Developmental Disabilities
Program Meeting Breakout Session
December 7, 2009, 1:30‐3:30pm
Moderator/Facilitator: Deidre Washington
1:30‐1:45 Introductions/Ice Breaker Activity
1:45‐2:30 States and Congressional Initiative 1) Successes and Strengths, 2) Share what is happening in
‐ Illinois‐ 1) network existing related to medical home. Strong bonds with other organizations.
State implementation grant, LEND grant. 2) Started out by recruiting families with the help of
ARC of Illinois to help parents be good care providers to their children, trained 90 families with
this curriculum. Next phase early detection with the screening programs. Final step is to choose
6 practices statewide to kick this off.
‐ Utah‐ 1) good collaboration to start out with between many agencies. 2) In the first year they
trained 8 medical homes; they all implemented MCHAT and figured out how to do follow‐up. In
the third year going to look at distance learning. Looked at what dental practices need to
develop a dental home. Enhanced website, medical home portal has enhanced info about
autism. Filmed a video about parents of newly diagnosed children to use around the state in
English and Spanish. Enhanced Child Find project in northern Utah. Working with early
childhood education to train educators in the preschool setting. Identified and trained 4 family
navigators to be a resource to families across the state. Training with all foster care nurses to do
ASQ on all kids that come in.
‐ Rhode Island‐ 1) Small state, ability for collaborators to get together. Concept of learning
collaboratively. 2) Issues with private practitioners making diagnosis of autism and schools not
accepting. Problems getting an assessment of function. Now started a program to assess
thoroughly. Plan for next year is to look at provider competencies, help them understand best
practices in intervention and treatment.
‐ Alaska‐ 1) Already had a state autism plan. Increased ability to push initiatives forward. Great
providers. 2) Initial efforts were awareness‐related. Distributed CDC materials to get the word
out. Trying to get a better idea of baseline knowledge of providers in the state. Working to
figure out the best way to distribute info. Working in collaboration with the infant learning
program. No road system, which becomes complicated to even get in to see a mid‐level
practitioner. Training people who can create access to screening. There is a relatively new
‐ Wisconsin‐ 1) Already had a state implementation grant, allowed to build a strong foundation.
This grant has allowed them to pull everyone together. 2) Have tried to integrate their work
with title V grant activities. There is a community of practice around ASD and developmental
disabilities. Set up electronic repository/portal with resources, including a place to put the
webcast series that they are in the process of developing. Working with U. Wisconsin to help
train FP residents through distance learning. Targeting the Milwaukee area to do more in‐depth
medical home stuff. Targeting an urban autism group. Partnered with great lakes and tribal
council to reach out to tribal people.
‐ Missouri‐ 1) governor very supportive of autism initiatives. There are existing grants to
collaborate with. Legislature set groundwork for projects they are working on. There is a MO
family initiative partnership. 2) Awareness building‐ disseminating an autism module that was
developed by a regional team, available at no cost to people across the state to educate people
about the signs and symptoms of autism. Learn the signs, act early program. There are three
tertiary sites in MO with family resource specialists to help access. Providing emotional support
for families. Linked by age, geographic location, and whatever is important to the family.
Grappling with issue of how to triage patients with suspected autism.
‐ Washington‐ 1) Momentum from a state taskforce and state recommendations. LEND program
got a grant at the same time they did. The partnership between LEND and title V is really strong
now. Lots of collaboration. 2) There are problems with diagnoses from certain groups not being
recognized by other groups, etc. Lots of referrals from community to get an autism diagnosis.
Plan to go to communities and help them figure out where all these referrals are coming from
and what each individual community can do to get them into the right services. Trying to save
DBPs from getting totally backed up, save them for the kids that really require that level of
‐ New York‐ 1) Large state, resource rich. Large service delivery system. Governor established
taskforces. Regional autism summit in NYC last spring. Systems implementation grant. 2)
Working on training of physicians on universal screening. Trying to find a technology approach
to train physicians. Difficult to recruit providers into their service system. Working on public
awareness for April, which is Autism Awareness Month. Planning to do some work with families
to help empower more families.
‐ New Mexico‐ 1) UCEDD and LEND program. Spent many years planning and organizing training.
2) Still getting started. Trying to get people on staff. This allows them to implement other
projects started with different sources of funding. They will be doing a day‐long session
involving the LEND program. Cultural/linguistic competence is integral, statewide project.
Particular interest in the native population, which is an interesting area that presents some
challenges. Addressing whether they can continue to serve the at‐risk population for part C.
‐ Congressional Earmark‐ 1) Wanting to do something to help other families. Developing tools to
help provide services at a distance. Recruiting children/families for home assessments (3hr),
followed by parent workshop. Goal to help children develop in the natural home environment.
2:30‐3:20 Moderated Discussion
What are your experiences with models, interventions, and tools regarding diagnosis? What has
worked? What are your lessons learned?
‐ Trying to find out all the ways that families are getting the diagnosis. Lots of people out there
making diagnoses, but not all of them competent to do that.
‐ In WI, community‐based waiver has criteria aligned with the Medicaid waiver. Trying to
promote evidence‐based practices.
‐ In RI, there are specific criteria around who can do what. Certain professionals can do certain
components of the diagnosis.
‐ Would be interesting to look at the trends across the states.
‐ In NY, governed by practice law as to who can diagnose what.
‐ ADAM (Autism and Developmental Disability Monitoring Network, which is a state surveillance
effort) site‐ look at where the diagnosis came from.
What are your experiences recruiting family practice physicians into training?
‐ Difficulty with FPs not routinely screening for ASDs.
‐ Once able to incentivize, able to get FPs in to train. Time of day, bring lunch.
‐ In Washington, working with the chapter president was successful to get the message out.
‐ Use families to get the message out
‐ Give AAP toolkit for autism and the first signs toolkit.
‐ Utilize physician champions to help in this work. Use these folks to help train FP residents.
Continually looking for opportunities to educate. Do this with pediatricians too.
II. Collaborations A. How have you collaborated with other agencies within your state and in
other states to improve your state’s system of care for children and families affected by
autism spectrum disorder and other developmental disabilities?
B. Identify opportunities and areas for cross collaboration between states
‐ Learn the Signs Act Early‐ lessons learned
‐ Right now strong collaboration between part C and others. Part C recs not updated since
1994. Head Start already ok to do screening.
‐ Utah‐ part C incorporated in the bureau. Program manager had a student do an evaluation
on the perception and the need.
‐ Illinois‐ kids coming to EI way too late, at point of aging out of EI.
‐ EI moving toward being more inclusionary.
‐ In NY, kids come in around 20 months of age. Don’t get diagnosed until around 24 months
‐ Struggling with how to get the word out. There are troubles working with different
communities such as Somali. In AK, they are beginning to do this with the tribal health
‐ In IL, waiver system has small number of people on it. IL developmental disabilities waiver
allows parents to use waiver for respite care (only 1000 kids can be funded with this
waiver). It’s like winning the lottery if you get selected for the waiver.
‐ Some providers reluctant to diagnose with autism if they are unable to provide services.
How can the states better communicate with each other and take advantage of lessons‐learned
from other states? What does that process look like? What opportunities do we currently have
and what types of opportunities need to be created?
3:20‐3:30 Wrap Up, Prepare for Report to Larger Group
‐ Wondering about having a states meeting in the spring
‐ Wondering about having quarterly regional meetings
‐ Community asset teaching‐ each state host a brown bag event every month or every other
‐ Lots of great topic ideas for conference calls.
‐ Big initiative this spring‐ Peer‐to‐Peer mentoring, would like to bring in all states.
‐ There is a list serve that has been underutilized for this group. Nice way to communicate long
distance on an ongoing basis.
‐ Asset mapping‐ what are community resources? Who is good with autistic kids of a certain age,
etc? Ethnic or cultural specific organizations?